Wednesday, September 28, 2011

Time and My Thousand Mile Journey

I haven't posted since July but it doesn't feel that long. I've noticed the longer I'm sick the more time loses its traditional meaning. Prior to getting sick time was measured in terms of hours of the day-meetings, deadlines, etc...it was also measured in terms of days of the week with Friday being my favorite.

Time is no longer about fitting in all I can in a day. It's no longer measured by hours of the day but more like Seasons of the year or split up between morning and night.

As some of you know I have a severe case of ME. My doctor says I have 'true ME' and I've been told by two doctor's that I will never recover but the most I can hope for are small improvements. While I don't like being told that I also appreciate it because it has allowed me to grieve for the lost hope of a cure or a full recovery and in grieving I've come to a place of acceptance. It has been a long, difficult journey.

In 2009 (I think) I found out that my Aunt and Uncle were going to be celebrating their 50 year wedding anniversary this year. They wanted to have a celebration along with a family reunion in an area that happens to be 500 miles away from where I live.

At the time I thought it would take nothing short of a miracle for me to be able to go. In 2009 and part of 2010 I was bedbound and had difficulty being upright for any length of time so traveling 500 miles seemed out of the question. I started anti-virals in Sept of 2010 which brought me from being bedbound to mostly housebound.

I was grateful but still thought it would be impossible for me to make the trip. I felt deeply saddened that I would miss another family event because of this disease and resigned myself to having to stay home. I kept the invitation in a place I could see it and prayed daily that somehow I'd be able to go for I wanted nothing more than to be in a room with the people I loved most in this world. I'd heard that everyone was going to be there which made me want to be there even more.

I knew it would be the last time we would all be together like that and it felt critically important that I go. I needed to see them it had been so long. I think I've mentioned before that I've always felt different and have been a bit different from the majority culture so I never felt I fit in anywhere while I was growing up. My extended family is the only place I felt okay about myself. I say all this because they gave me the biggest gift growing up. They loved me for who I am. And in doing so, helped me to accept myself. They have given me so much more and I can't do justice to how much I've learned from every single one of them.

My Aunt's and Uncle were praying that I'd be able to attend. Somehow. Then my sister and brother-in-law said we could use their van to travel up and back thereby making the trip more doable.. They took the seats out allowing me to lay down for the whole trip. I spoke with my ME doctor who said that it's possible that by going I could do permanent damage to my system but that sometimes one has to do something for one's Soul. So I went back and forth about whether or not to go. I didn't see how I'd be able to travel 500 miles since traveling 75 miles to see my doctor is too much. My doctor recommended taking extra klonopin to help my nervous system and brain deal with the sensory stuff that occurs with travel.

The decision felt very difficult because on the one hand I was worried that if I traveled I would become bedbound again and I just didn't think I could handle that again. On the other hand my heart and Soul needed to see my family and I couldn't imagine not going.

The event took place in mid-August on a Saturday. If I was going to go I needed to decide by that Thursday because we would need to take 2 days to get up there. By Thursday morning I'd decided I shouldn't take the chance with my health especially since I'd worked so hard to go from being bedbound to housebound and I didn't want to risk losing those gains.

At 3:00 that afternoon I decided we should go so we did. It was a rough trip physically. It took over 12 hours to get there (split up over 2 days). The ride in the van was tougher than I thought it would be even laying down. At one point we drove over a rough patch of road that was under construction and I thought I would vomit because the movement was rattling my system.

When we finally made it there I crashed badly. That Saturday morning I felt so bad physically I didn't see how I'd be able to attend the celebration that afternoon even though I was right in town. I even said let's just start driving home there's now way I'm going to make it.

Somehow I did. I took it literally one step at a time, one hour at a time. We arrived at the celebration and I was deeply moved at being with my family again. I think my love for them along with the Grace of the Divine helped me make it til the end of the evening.

For 6 miraculous hours I felt free of this disease. I had some rough moments where I thought I was going to pass out but luckily there was a chair nearby. Mostly I felt such love for my family and love from them. I was in heaven.

I felt like Cinderella getting to go to the Ball. It was the first time I'd been around that many people in over 4 years.

It was only by the Grace of a Higher Power that I was able to do this.

I've been crashed ever since getting home over 6 weeks ago. It's been a hard crash but my heart is full. And I'm eternally grateful that I got to see them. What a gift that was.

7 comments:

Wow!! That is awesome, you are so brave!!! I am terrified of what might happen if I try going beyond my front door .... and you travelled all that way AND went to a social function!!! That gives me hope that anything is possible. I hope that after 6 weeks of being crashed you come out of it very soon.Thanks for sharing, it's and inspiration. x

I do understand.I've done things for my soul's sake at times, too, when I knew I would pay. My only remaining family is that far away, too, but I just don't think I could take that big of a leap. I'm glad you did. I applaud your courage.

That's so awesome. I'm so glad you went. My parents moved to Alaska (I'm from Houston) and I go up there once or twice a year. I do the same thing...crash when I get there at first. Then, though, my body somewhat adjusts and I'm able to enjoy being with my husband and parents at the same time again- and enjoy seeing the sites of Alaska. I'm leaving in about a month- please pray for me with the cold weather!

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About Me

I first became ill in July of 2007. Or at least that's when I started having symptoms that I couldn’t explain away with being too busy, too stressed, not eating enough, not getting enough rest, etc.
In August I passed out while eating in a restaurant. In September I remember climbing some stairs while visiting a museum in SF and feeling a sense of profound fatigue. As I climbed the stairs I thought to myself "it's as if my cells aren't getting enough oxygen"and for a minute worried I might have some sort of leukemia. During lunch I literally had to put my head down to sleep.
By the end of December of 2007 I was housebound due to dizziness, fatigue, cognitive impairment and a myriad of other symptoms.
I'd completed my dissertation in 2006 and awarded my PhD in Jan 07. I'd always been active, athletic, driven.
Imagine my surprise when this all happened. It's been a life changer.
This illness is not for the faint of heart. 20% of people with cfids commit suicide. It's a fact. The illness is that devastating. I used to believe that cancer was the worst thing one could have. I no longer believe that.
Luckily I plan on getting as well as I can with the right help